Joint Committee on Gender Equality debate -
Thursday, 16 Jun 2022

Recommendations of the Report of the Citizens’ Assembly on Gender Equality: Discussion (Resumed)

Chairman

I welcome our witnesses and I am delighted to see them all here in person. It is lovely to be back in in-person settings. Members have the option of being physically present in the committee room or may join the meeting, as quite a number are, via Microsoft Teams from their Leinster House offices. Members may not participate in the meeting from outside parliamentary precincts. If joining on MS Teams, members should please mute their microphones when not making a contribution and use the raise hand function to indicate. Please note that in order to limit the risk of spreading Covid-19, the Service encourages all members, visitors and witnesses to continue to wear face masks when moving around the campus or in close proximity to others and to be respectful of people's physical space and adhere to public health advice.

We are continuing our meetings on the recommendations of the citizens' assembly and we are focusing on the recommendations on care and social protection, recommendations 4 to 19. We are delighted to engage today with Professor Kathleen Lynch, Family Carers Ireland and Care Alliance Ireland. I thank them all for coming in.

Our committee is a special Oireachtas time-limited committee established for a period of nine months from the start of March of this year. We are midway through our programme and have been considering the 45 recommendations of the Citizens' Assembly on Gender Equality, which we regard as a blueprint for achieving gender equality in Ireland. It is our intention as a committee to produce a practical report as to how best implement those recommendations at the end of our term in December. We are focused on that practical how-to piece and we do not seek to duplicate the work of the citizens' assembly. We are grateful to those stakeholders and others who have engaged with us and have given us written submissions and who are coming in to public hearings with us. We are focusing very much on the practical implementation of the recommendations.

I welcome Professor Kathleen Lynch from University College Dublin, UCD, who will be first to speak; Ms Zoe Hughes, senior policy and research officer with Care Alliance Ireland; and Mr. John Dunne, chief executive officer, and Ms. Clare Duffy, policy and public affairs manager, Family Carers Ireland. I invite each of the witnesses to give a five- or six-minute opening statement in turn and we will then go to a question and answer session and discussion with members.

Before we begin, I must read an important notice in on parliamentary privilege. Witnesses are protected by absolute privilege in respect of the evidence they are to give to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled, thereafter, to only qualified privilege in respect of their evidence. Only evidence connected with the subject matter of these proceedings is to be given and witnesses are asked to respect the parliamentary practice to the effect that where possible, they should not criticise or make charges against any person or entity by name or in such a way as to make them identifiable.

Having given that notice, I call Professor Lynch to make her opening statement.

Professor Kathleen Lynch

I thank the committee for inviting me to speak. I will draw on my extensive research on care, in particular, care within families, care of children and on a book I have just recently written on care and capitalism. I will make five observation on the universal need for care; that care takes different forms; the commercialisation of care; the need for a national care planning unit; and the question of measuring care. We learned something important during the Covid-19 pandemic, which is that most people cannot enjoy life without care. Most people realise now that we are relational rather than autonomous human beings. It may seem very academic but it is hugely important because vulnerability, dependency and interdependency are endemic to the human condition and nurturing is what makes us emotionally healthy and happy human beings. Given the primacy of love and care for mental and emotional health especially, Ireland needs to develop a political and cultural appreciation of care as a political principle. In fact, there can be no political or social justice without imbuing public policymaking with an ethic of care.

Care takes different forms and I want to make a few observations on this. It is always spoken about as if it is a singular entity but it is very important to distinguish when talking about children especially and older people who are very dependent, that love is separate from care and love is not substitutable. People who are very old, no matter how vulnerable they are, need love as well as professional care. Love is the relationships which we have with others, which are intimate and which we cannot transfer to someone else. You cannot pay someone to go visit your mother in hospital and say that is yourself. That is an important issue because sometimes we think we can regulate people to love and care for people professionally. Unfortunately, we can ensure their safety but we cannot force people to be kind, gentle or loving to somebody else. That is an important issue in terms of how we speak about care, especially care of children but also care of older people, because care takes time and care is always in competition with our political time, our economic time and our market time. Professional care has a voluntary and personal dimension to it and, in much of the talk about care, this is often forgotten. Someone cannot be forced by regulation to give empathy and understanding. It is not simply supplied on contract. While educating people helps them to be more caring, it does not necessarily guarantee it. If we have hurried care, if someone is constantly under pressure and if there are time pressures, people will simply not have time to give meaningful care to another human being and this is a significant issue with the care of older people. Defining personal care, as it often is, as bodily care, also shows a profound lack of respect for the feelings and needs of people as emotional human beings.

I want to refer briefly about commercialisation. Ireland has experienced a huge change in the past 25 to 30 years in how it provides care, especially for older people but even for children. For-profit care is now the biggest player in residential care for children who are going into State care. More than half of the homes for children in residential care are for-profit. This has been brought up lately by Tusla. I am making these comments as observations. Most providers of day care for children are private operators and they are businesses, albeit small ones, though some are big businesses and I have referred to them in the submission. In the case of nursing homes, 70% of nursing home beds are now owned by for-profit companies. This is an exact reversal of what it was in the 1980s when 60% of nursing home beds were provided in the public sector, 25% in the voluntary and community sector and 15% in non-profit private sector. This is a major change in policymaking. There is a graph showing this in the submission I have made to the committee. The same is true in home care. The proportion of public expenditure allocated to private-for-profit rose from 5% of all expenditure in 2006 to 40% in 2019, while HSE delivered home care declined from 85% to 50% in 2019. Table 2 shows this. Why does this all matter? When for-profit begins to dominate residential care, home care and childcare, it sets the terms and conditions for other care providers in the field. The corporatisation of care changes the terms on which care is given. There is a lot of international research on this. Reducing pay, casualising labour, short-staffing, charging hidden fees, social costs, and often, in some cases, only taking wealthier clients.

The financialisaton of care is also part of what happens with commercialisation. Although we are having no discussion on this, I refer the committee to two reports published recently by Public Services International entitled The Crisis in Long-Term Care - Effects of Private Provision; and Care Givers and Takers - How finance extracts wealth from the care sector.

Why does all this matter? Does it matter who provides care? Yes, it does. Commercialisation alters the terms of the debate about care, defining it as a "product", often ignoring the ethical and relational dilemmas endemic to caring. I will make a number of quick observations about care. Care logic is different to market logic. It is about meeting human needs and not efficiencies per se. I am not saying they do not have to be efficient but it is about meeting needs. Care cannot be measured in quantifiable outcomes because it is an experience rather than a product. Care needs are variable; they vary with the person. Also the temporal logic of care - how we use time and how we think about time - is very different. Care cannot be done in measurable time because it is driven by needs, as anyone who has been a family carer knows, rather than by specific timeframes. It is not infinitely condensable. You cannot give fast care like you give fast food. If you do, you have the same consequences except in the case of care what you have is people getting pre-packaged units of supervision. They do not get care.

Good caring is about relationships and they cannot be supplied by regulation or order alone. Relationships have to be developed and therefore staff need to be continuous and supported and they need to stay over time. The rationality of care contradicts bureaucratic logic. That is why so many people do not want to go into institutional care because they know in a bureaucracy, regardless of how well managed it is, there is always a problem with bureaucratic rules and regulations, which are inevitable in large institutions. That limits the flexibility available to meet the nurturing needs of very vulnerable people, especially people who are non-verbal.

The very concept of "care package", which is ubiquitously used in Ireland, implies that care is a commodity like a package of groceries. This contradicts the very meaning of care. It changes the definition of a person from a citizen to a customer. A citizen has rights and responsibilities. They are not a market product. I will give the committee examples of how many of our Departments have started using market language at the end.

My next point is about democratic changes. I cannot understand why we do not have a national care planning unit. We know, for example, the demographics in the case of older people. If we can model for the pandemic and make predictions surrounding people, surely we can make predictions of the needs and costs of caring for people according to their own wishes as they get older. The same goes for childcare.

Finally, I want to make a remark about measuring care. The census, since time immemorial, has only measured the care of adults, as care in Ireland. As far as I remember, 25 years ago we made a submission saying that question No. 21 should be changed. A huge number of people, mostly women, are also carers of children and some are carers of adults and children. I ask that question No. 21 be changed in any future census so that care is measured.

I thank the committee for its attention and I am very willing to make observations on other matters as well, but that is all I have to say for now.

Chairman

I thank Professor Lynch and I congratulate her on the publication of her book, On Care and Capitalism, which is very much relevant, not only to her submission today, but to our consideration of the recommendations. I thank Professor Lynch also for the very detailed comments she has given us in her appendix, on the individual recommendations of the assembly. They are very welcome.

I ask Ms Zoe Hughes from the Care Alliance Ireland to give her opening statement.

Ms Zoe Hughes

I am pleased today to be here to represent Care Alliance Ireland and make this statement to the Joint Committee on Gender Equality. I would like to thank the

committee for the invitation to be here today. This week is National Carers Week, an awareness week for family carers which we in Care Alliance Ireland have co-ordinated for the past 15 years. As such, it is particularly fitting that the committee is discussing some of the key recommendations from the Citizens Assembly on Gender Equality, with specific reference to care.

For those of you who may be unaware of the work of Care Alliance Ireland, we are an umbrella organisation and our 95 strong member organisations are drawn from across the caring, disability, addiction, mental health and chronic illness sectors. We provide research, policy and governance supports to our membership, as well as providing online supports to a growing number of family carers across the country.

Typically, when one pictures a family carer, a distinct individual comes to mind. This person is probably female, somewhere in the age range of 35 to 60, and likely also raising her own children while caring for her ageing parents. This is borne true in the statistics as there is a high concentration of female carers in the 40 to 50 age group according to the census. This cohort of carers are often described as sandwich carers. However, when looking at carers who are older than this, the gender gap begins to close, and by age 80 there is a much more even split of care between men and women. However, when the intensity of caring is examined, it becomes clear that female carers provide significantly more hours of care, in particular at the higher intensities of care.

Internationally and historically, caring has been a gendered activity. Care and caring has long been established as a predominantly female occupation, with the work of caring and the attributes of caregivers being feminised and consequently of low status, and receiving little recognition. Much of the modern carers movement has developed from a push to have the value of the work of female family carers recognised. While this is changing, and we look forward to the work of the committee in this regard, there is still an element of gendering involved in how caring is viewed.

Care Alliance is particularly concerned about the lack of attention and regard given to those providing care who are not female. Male and non-binary carers are often left completely out of discussions on care. Due to this feminisation of caring, and the resultant lack of status and recognition for caregiving activities, male family carers may experience significant stigma, not unlike the stigma faced by fathers who wished to become more involved in their children’s care and development in previous decades, and one could also argue, currently. There are many who see a man who engages in caregiving activities as weak, or feminine, regardless of the relationship to the cared-for person. In addition, there have been cases of young male carers experiencing homophobia, regardless of their sexuality, due at least in part to their caregiving role.

Turning to the recommendations of the Citizens' Assembly on Gender Equality, we are in broad agreement with those made by the assembly. We agree that Article 41.2 of the Constitution should be deleted and replaced with gender neutral language to fully reflect the diverse nature of care and caregiving. We also agree that Article 41.3 should be updated to reflect the modern Ireland we live in and the values of our country. We believe all families should be recognised in the Constitution and afforded rights and protection, not just marital families.

The citizens' assembly made some truly radical recommendations regarding issues such as the reform of carers allowance, reimbursing the direct and indirect costs of caring and disability, and the reform of respite. We welcome these recommendations wholeheartedly. Last year, we partnered with the Institute for Social Science in the 21st Century in University College Cork to undertake research with family carers and interested stakeholders in reviewing the objectives of the national carers strategy. Unsurprisingly, the top three priority action areas identified by both family carers and the other stakeholders were income supports, supports and services, and respite. This shows a clear need, not just coming from the recommendations of the citizens' assembly, but also from family carers themselves, along with professionals working in the area, for real reform of the existing systems of respite. This need is echoed by the feedback we receive from our member organisations across the country. This need has become even clearer as we emerge in some form from the Covid-19 pandemic and have an opportunity to rethink how respite is accessed, and in what forms.

There is not sufficient time in this opening statement to address all the recommendations made by the citizens, which we are here today to discuss. However, the final point I would like to make relates to the continued siloing of our health and social care services. For decades, people with disabilities, their family members and advocates have highlighted how easily some people fall between the cracks. Transition points, particularly between school and adulthood, can be extremely challenging. Services, supports, and even policy departments are often set up as mental health or disability or older people. This is unacceptable in 2022, when a holistic approach across the life course is critical to successful living, and successful aging.

I would like to thank the committee for inviting me here today. I am happy to take any questions members may have.

Chairman

Thank you very much, Ms Hughes, and for reminding us that it is national carer's week. It is Bloomsday today as well. I invite Mr. John Dunne and Ms Clare Duffy from Family Carers Ireland to make their opening statements.

Mr. John Dunne

Thank you, Chair. I will start by apologising for script. I will address you as cathaoirleach an choiste if that is okay and suitably neutral.

Chairman

The script has me down as Mr. Chairman.

Mr. John Dunne

What can I say? I offer my apologies to the Chair.

I thank the committee for the opportunity to address the citizens' assembly’s recommendations with it. I will start by making some comments about the gendered dimensions of family caring. About half a million people in Ireland provide care in the home and they save the State some €20 billion a year. According to the census of population, which frankly we do not consider a terribly reliable source of information with regard to caring in Ireland, 61% of carers are women. The social protection statistics do not correlate with that because across the three care-related social protection schemes, the vast majority of recipients are women.

Some 77% of claimants of carer's allowance are women and it is 83% for carer's benefit.

According to the EU Gender Equality Index, not only do female carers outnumber men - somebody made the valid point that a significant number of men provide care - care is also provided in gendered ways. Women tend to provide more intimate and intensive forms of care than men, such as bathing and dressing, incontinence care and support with complex tasks. While this is not universal, men’s contribution is more likely to be concentrated in care management, household maintenance, shopping and transportation.

A 2019 study, Caring and Unpaid Work in Ireland, undertaken by the ESRI and the Irish Human Rights and Equality Commission, IHREC, found that 55% of those providing unpaid care juggle their caring responsibilities with paid employment and that on average women spend twice as much time on care work as men. This substantial gender gap persists even among men and women doing the same amount of paid work. The gender imbalance in care provision has obvious policy implications for how we reconcile care and employment, how we encourage greater male participation in care, and address the clear connection between caring responsibilities in the home and gender inequality in the labour market. A redistribution of care responsibilities between men and women, as well as between the family and the State, is therefore critical to achieving gender equality.

My colleague, Clare Duffy, and I will be happy to discuss any of the nine recommendations later in this session. For the moment, I want to highlight our position on three of them: the amendment of Article 41.2; replacing carer's allowance with a new social contract for care; and terms and conditions of those in paid employment as home care workers. Care in the home is dependent on services provided by a very underappreciated cohort of the labour force.

Regarding amendment of Article 41.2, I am not sure if Ms Hughes misspoke on this because I do not believe we disagree on it. The wording of Article 41.2 is clearly unacceptable. We favour amending the article rather than deleting it. I know Ms Hughes said delete and amend. There was a big debate about whether it should be deleted. We see real value in it. If the problematic language is taken away, there is acknowledgment of the value of care in the home and we believe it is important to retain that. We welcome the recommendation that the article be amended so that is not gender-specific in its language and obliges the State to take reasonable measures to support care in the home. That is important.

There are basically three systems relating to a legal definition around Europe. There is the Scandinavian system where the state takes the lead responsibility and looks to the family to provide secondary support. In countries like Estonia the family has a legal responsibility and the state maintains that because the family must do it, the state wants nothing to do with it. Portugal is probably a good exemplar where it is the family's responsibility but it is written into its constitution that the state recognises and acknowledges its responsibility to support families. We believe we should be moving towards that kind of model. To be fair, that is what the assembly recommended.

The rewording of Article 41.2 also offers a unique opportunity to define where ultimate responsibility for care should lie. We are unusual in Europe in that we do not have any legal definition of this. In the sense that we do not have any definition it could be argued that it could go any way. Our strong feeling is that the likeliest consensus is a model where the family has lead responsibility and the State has a responsibility to support. The assembly endorsed that and we agree.

I will not propose a specific wording for the new article now because it is better to take a principles-led approach. We would like to see the article reflect the following principles: explicit recognition of the value of unpaid care provided by both men and women; acknowledgment of a comprehensive range of caring relationships and family types, which is clearly an issue as our society changes and evolves; an obligation on the State to provide adequate support to those providing unpaid care across all areas of Government policy because we sometimes tend to see care as something to do with the health system and perhaps the social welfare system, but housing and transport are also critical in this; and respect for a person’s right to respite from caring, to cease caring and to balance care with paid work.

Generally speaking, many family carers start caring somewhat unconsciously and they do not identify as carers. As their caring responsibilities progress and increase, they suddenly realise they are in a dependency relationship. They are creating dependency for the person they are caring for. I have been on that journey, and it is a terrifying point to reach. In a sense, the carer is signing up for a lifetime gig after that. The terrifying bit is that the carer is signing up in the sure and certain knowledge that there is no support to allow the carer to take a break or being able to say at some stage, "I can't cope anymore. I am 77 now. I've got a bad back. I can't look after my 94-year-old mother." By the way, I am not 77. I am just giving an example. It is really important for that to be reflected in some way in this development.

The second concept relates to the social contract for care as we call it. We need to be more ambitious in our support for family carers. Our pre-budget submission for 2023 calls for a fundamental reform in how the State categorises, compensates and values family carers. Our proposals are ambitious but not unreasonable given the Government’s legislative and policy agenda which is contributing to the formalisation of informal care and increasing society’s reliance on family carers, and exploring new forms of long-term income support.

Our analysis of the history of the carer's allowance and the limitations that derive from its classification as an income support rather than a basic or participation income are set out in an appendix to these opening remarks. I do not have time to do justice to them now. They may be summed up as follows. The current carer's allowance is not financially adequate to address the costs of caring. The carer's allowance is gender-biased and overly restrictive. A basic income for artists scheme is being piloted and the National Economic and Social Council, NESC, is recommending a participation income scheme. We believe the carer's allowance should be replaced by a scheme modelled on these.

At a minimum, the payment should be pitched at the equivalent of the terms of the foster care scheme. Adults looking after children who are not their own and where those children have additional needs are given almost €600 per week, tax free and exempt from means testing. However, a family looking after their own child with serious needs get a maximum of €302, if they are lucky, subject to a means test. Members of the committee will be looking at the budget in due course. As an interim measure, we suggest that the carer's benefit and allowance should be increased to €325 per week, bringing it in line with the basic income for artists. The weekly means test disregard should be increased to €1,000 for a couple and €500 for an individual.

The final issue relates to the pay and conditions for home care workers. This is important because the family care system depends on home care workers and care assistants. We note the assembly’s recommendations on improvements in the terms and conditions, training and progression opportunities for those in paid employment as carer workers. The quality of home care is more dependent on the quality of front-line care workers than any other factor. For this reason, Family Carers Ireland as an employer of home care workers and an advocate acting on behalf of family carers is doubly concerned with the quality of employment of home care workers as fundamental to developing and sustaining a quality care system.

There is currently a critical shortage of home care workers. While this is often attributed to poor terms and conditions in the sector, the role of State commissioning in setting prices and promoting an unsustainable race to the bottom is routinely overlooked. The delivery of the statutory home support scheme is dependent on having access to a skilled pool of home care workers available across the country.

It is important that future legislative changes provide for a system that will enable this to happen. At a minimum, this requires parity of terms and conditions, including pay rates and travel time and expenses for all home care workers, including those employed by the HSE and contracted providers. We need graduated pay rates to reflect different levels of qualification and experience required for different levels of complexity in client need. This would allow a potential career pathway for those choosing to make a career of care work.

We need to address issues on the interface between care work and social protection schemes, notably anomalies relating to the four out of seven-day rule whereby somebody who is working and getting paid for 24 hours over three days may claim a partial jobseeker's allowance for the other days. If they work one hour a day for four days, however, they cannot claim anything, which is a rather strange anomaly. We need to move away from the casual employment model implicit in agency contracts in the home care sector which represent a significant factor in the interface with social protection schemes. Why would carers give up a social protection benefit which is at least constant on the basis that they will get paid €200 this week but have no guarantee of being paid anything next week.

The final requirement entails policies to promote gender balance and attract more male care workers to the sector.

I thank the members for their time and attention this morning. Ms Duffy and I will be happy to answer any questions in due course.

Chairman

I thank Mr. Dunne for that and the detailed account of some of the anomalies. It was very helpful to us. As he said, the Citizens' Assembly had some very clear recommendations, particularly on the reform of the carer's allowance. I thank Mr. Dunne for his insights into Article 41.2. He and Ms Hughes are on the same page. The Citizens' Assembly recommendation speaks of deleting and replacing, which is another way of saying "amending". We are currently grappling with different wordings that might potentially be put to the people in line with the recommendations of the Citizens' Assembly on constitutional change. It is very helpful to hear the views of Family Carers Ireland on those too.

Senator Pauline O'Reilly

I thank all the delegates for attending. This is a topic I feel very passionate about. I spoke at the same joint committee as Mr. Dunne on the very issue of the constitutional amendment. It is no exaggeration to say every political party bar our own has been seeking to delete the part of the Constitution in question. Sometimes it feels like you are shouting against a stream when it comes to carers, partly because those who get elected and make policies are usually working for pay and are not those who are really representative of carers and those who are at home. To come out of the home and enter something like politics takes a big leap. People do it because they feel they have no other option since there is nobody speaking for them. This is the reason I went onto the Labour Panel. However, I completely agree with Professor Lynch's point in that this is not about labour. We sometimes talk about care and labour as if they are the same thing. It is not necessarily about unpaid labour but about a different thing. Sometimes it is about labour but sometimes it is about the person being cared for and their right to be cared for as well as our right to be recognised for the care work we do. We need to separate out the facts that some people are caring for those with additional needs with unique challenges on that basis and that there are those who are caring for their children or older members of their family. It is almost an embarrassment to say one wants to provide such care. There are many things like the carer's allowance to support those caring for those with additional needs but there is no reason somebody who wishes to care for his or her own children should not be able to make that choice and put food on the table.

Mr. Dunne spoke about the universal basic income for artists. I feel very strongly that a universal basic income should be considered for those who are caring because those who do not have an income are currently the ones who are hard-pressed. As human beings, we should not have to make a decision in this regard.

What social or policy instruments can or should we use to make sure Ireland does not become a place where we talk only about institutional childcare? Asking that is not to denigrate the profession at all but to say there are several types of care. The Minister responsible for children, Deputy O'Gorman, has said he is going to invest a significant amount of money in childcare. Are there other Departments that should be making finances available to ensure we do not say nobody can care for their children at home because they cannot afford the inflationary impact of that?

Those are my initial thoughts on the matter. It is really good that we are having this airing but I do not want it to focus only on our right to get back out to work and to have an affordable childcare model. There is another part to being human, which is about caring.

Professor Kathleen Lynch

Let me comment on the question of the current rates of maternity and paternity benefit. I have the notes here. The benefit is available only for six months. The other six months, the other 26 weeks, is unpaid. The figures I have show that 46% of people do not get a top-up. I am talking about circumstances where there are small children or babies. At the moment, when the six months is up, the people who are likely to get a top-up from employers are those in the public service, the Civil Service and larger places of employment. However, the low-paid workers and people in many sectors do not. There should be an analysis, especially regarding children under the age of one, or babies, of why we cannot have proper pay for care at home, as recommended by the Citizens' Assembly for the first year of life and as in Norway and, in particular, Denmark, where it is very good. It would actually be far more cost-effective. That is a very important recommendation. We know that in 2019 just over half of men took the two weeks' leave because the payment is only €250. If one does not get topped up, it is an issue. Consider the circumstances if there is a mortgage. If two people took maternity and paternity leave for a month on the State benefit, all they would get would be €2,000. Those with a mortgage or rent of €1,250, which is very common, are supposed to live on €750. That is completely untenable; you just cannot live on it. What is happening - people with small children are aware of this - is that the crèches are not taking babies, as members probably know. It is very difficult to get places for babies under one year of age. I suggest that the State assess the cost and viability of an extension, and also the sustainability in the long term for mothers and fathers who would like to care for their children in the first year of life, in particular. The benefit certainly should be higher, as the Citizens' Assembly said. The €250 is only one third of the average industrial wage. Even if left at that, it would at least be available for the year for parents. It would also reduce the cost. As I said in my submission, we forget that childcare, as it stands, is a business in Ireland. No matter what gloss is put on it, that is what it is. I am definitely in favour of publicly funded childcare in every town. I heard Senator Doherty or another individual say at the committee's last session that it should be available. There are 3,000 primary schools in this country. We have an inordinate number for the size of the country. Can we not come to some agreement in those to have local community care, which would be local, accessible and available on a national basis once one gets a little bit older? That would be extremely welcome. I definitely believe it would be welcomed by parents. Of course, that is not to say there would not be some parents who would need childcare. Quite frankly, if you are at home all day with a small baby, it is nice to get a break. I am not saying you have to stay there. I am very conscious that women are very well qualified in this country and that most of them want their financial independence; however, for the early stages of life, there definitely should be one year of stay-at-home care, as recommended by the Citizens' Assembly.

Chairman

That is recommendation No. 9 of the Citizens' Assembly.

Professor Kathleen Lynch

Yes.

Ms Zoe Hughes

I just want to address a couple of the Senator's points. The universal basic income is not just about the level of pay; it is also about recognition of the work that family carers do. Obviously, what we are looking at is family carers. I have tried a few times to explain to family carers that they are not actually earning money for the work they provide to the State and that the money is seen as an income support to keep them out of basic poverty. It is a matter of understanding that it is not a payment and that it should be. Many family carers would like the recognition. It would mean an awful lot to people to be recognised as contributing work, which is what they do already. It involves a small language change but a language change can be really important.

The Senator asked what Departments should be involved. I would say all of them should be. Care is so cross-cutting that I do not believe there are any Departments or policy aspects that are not related to it in some way.

Ms Clare Duffy

My point, which reflects what Ms Hughes has said, is about the use of language and the reference to a universal basic income rather than a "participation income", which is the phrase that NESC used. It recommended, in particular, a participation income for carers because carers are participating and contributing. The language is just slightly different.

My main comment, which relates to what Professor Lynch said, concerns the supports and policy instruments that are needed. I am thinking specifically of family carers of older people, people with disabilities and so on. We have in this country some of the best legislation that facilitates carer's leave.

I have never seen another country that has better carer’s leave legislation than we do here in Ireland. If a person is working and needs to leave work in order to care for someone, he or she has 104 weeks, which is two years, in which he or she can leave. During that time, if a person has enough PRSI contributions, he or she gets a thing called carer’s benefit. It is comparable to going on maternity leave and getting maternity benefit. Instead, a person goes on carer’s leave and gets carer’s benefit. Because carer’s benefit is not benchmarked against a person's previous salary, however, it means the vast majority of people, that is, 83%, who claim carer’s benefit are women. Carer's benefit, as it stands, is €1 more per week than carer's allowance. Carer's benefit is €225. Even just looking at how we can link it to a person's previous earnings would be really helpful and, again, to rebalance that gender inequality that currently exists.

One thing to say is that even though we have that lovely legislation, which is the Carer's Leave Act 2001, there are never really any more than 3,000 people availing of that at any one time. The take-up is incredibly low and it has to do with that income adequacy and how someone will pay the mortgage with €225 per week.

Chairman

That was a really interesting insight. I thank Ms Duffy.

Mr. John Dunne

I know our job is to come in and tell the committee what we want and make it look nice and easy, and then the committee is supposed to go off and do it. I will unpack some of the complexities around this, however. The idea of classifying carer's allowance or carer's benefit as an income support is problematic. Moving in the direction of treating it as payment for work is also problematic. I say that because I would like the committee to consider this a bit. In the Danish system, if a person is a family carer, he or she is actually employed by the local authority, which is not as strange as it sounds because the local authorities deliver the care services over there. A person becomes an employee, however. I have still not figured out how they manage that in terms of the Organisation of Working Time Act 1997 and health and safety. That is where the idea of something like participation income begins to sound very attractive.

Mind you, having said that, Ms Duffy raised the other point of pay-related social benefit. God knows I am old enough to remember a time we used to have it in the past unless I am dreaming. There is talk - or I have at least picked up talk - in Government circles of beginning to maybe move in that direction again. It would certainly be a significant factor in helping the interface between the social welfare system and the care system, let us put it like that. As regards the idea of complications like the Organisation of Working Time Act 1997 or health and safety, however, the State has been correct to try to stay outside the front door and not go into the home. Yet, at the same time, obviously, much care happens at home. It is a very tricky line to walk. Therefore, in terms of the committee's deliberations and the expertise on which it can draw, it probably merits much reflection.

Senator Fintan Warfield

I thank the witnesses for their very informative statements and contributions so far. The discussion has probably progressed a bit but I have a question for Professor Lynch. She made an intervention at the beginning about commercialisation and how that alters the terms of the debate around care by defining it as a product and so on. Is that creeping commercialisation of care a kind of modern manifestation of the State's reluctance to provide and deliver fully integrated public health and social services that might have been developed elsewhere around Europe?

The following two questions could perhaps be taken by all witnesses. Mr. Dunne said census data are not entirely reliable. Do all the witnesses agree that the Central Statistics Office, CSO, needs to amend futures censuses to include a question that captures children who care? Would it be an idea for that to be supplemented by school surveys that are overseen by the Department of Education or relevant Departments and the CSO?

Ms Hughes might want to come in on my next question. I am interested in the homophobia that might be experienced by male carers, regardless of their sexuality, which is obviously an important clarification to make whenever we talk about homophobia. Where is that homophobia coming from? Is it coming from peers or is it in their work or from families? Those are all my questions.

Professor Kathleen Lynch

I thank the Senator very much for his questions. The first question is very important because Ireland has moved into a new liberal capitalist model, whether one approves of it or not, in the provision of services with the withdrawal of the State, as I showed in my presentation, from the care of older people especially. Of course, it never existed for children. It is a highly gendered matter because as Pauline said - I am sorry; I should not call the Senator by her name.

Senator Pauline O'Reilly

We will move to first names.

Professor Kathleen Lynch

The thing was that women did the work for nothing. They did it without pay and in conditions that were invisible. The invisiblisation of care became very evident in the pandemic but it remains a problem for precisely the reasons mentioned. People are at home every day. I should say that I have been a family carer for the last eight years so I am very familiar with this both in theory and in practice. Mostly, a person cannot get out of the house; he or she is there and tied to care. A person cannot bring his or her granny downtown in a wheelchair to make a protest if she is in a bed. I think that is a fundamental problem.

Our public services are also a problem, however. Most of our public services are care services. If we think about education, educare in Latin means "to nurture". Healthcare is about care and welfare is about care. I will go back to the Constitution, which, of course, I wrote about it in 1996 in the report of the first Constitution Review Group. I fundamentally believe care should be a core principle that is supported in the Constitution. Without it, we cannot have a caring democracy. I am not necessarily saying the State should be intervening in everything but it should facilitating and enabling; it should not be reducing. There is a danger, which I only mentioned in passing but which is huge in the literature, once we start to financialise care, as opposed to just making it commercial. I mentioned in my presentation, for example, the Barchester Corporation, which is a big commercial care provider in the UK. It has 12,000 beds and 200 nursing homes. It withdraws money from the sector. It makes much money from the many companies it has in the care sector. This is just an example. Therefore, if we are sending people out to make profit, we cannot treat them the same way because the focus is on efficiency. It is cutting time and cutting corners and not being available and, as Family Carers Ireland said, people do not get contracts. Therefore, if somebody is employed for four different hours in four different places then it is not worth his or her while to work because he or she has no security. That is because we have not had a care-led narrative or a feminist narrative at the heart of the State.

Care makes us up as human beings. None of us will live unless we are loved or cared for and we certainly will not live well. Care takes time and it is expensive but what happens if we do not do it? I would love to see in some future committee an analysis of the whole relationship between the quality of care people have, especially young people, and their emotional mental health. There are consequences if we do not take care of people. Nurturing time is long time; it is not fast food and it is not fast care. That must be provided and supported by the Exchequer.

Senator Warfield is right to ask those questions. We have moved away from the idea of a caring society to one that is driven by profiteering and even personal gain and careerism. It is about always about profit; it is about career and power. We must look back and refine that, and rethink not only the care services but the other, what I would call public, services, which are fundamentally about caring.

I agree with the Senator about childcare. Those issues must be properly measured in any future census data. A big national issue, though, is how we collect data because much of our data are often not available for analysis in a manner that is accessible and available to people who might use them not just for research but for policy purposes.

Chairman

I thank Professor Lynch.

Ms Zoe Hughes

I will address the first question on census data. The short answer is "Yes". Anything that can make the data that we have on care and caring more robust is always welcome. I know there may be some issues around that because for some there may be an element of stigma in the family, for example, so the person who is filling out the census form may not want to recognise that his or her child is caring for him or her, or providing significant levels of care in the home. There is a level of stigma around children providing care. There are issues around that. There are school studies that have shown that the prevalence of young people and children providing care is much higher than one would think. I cannot think of the numbers off the top of my head but they are available and they will be provided in a later response. We are in favour of anything that can make the data more robust.

We share the same concerns about the census as Family Carers Ireland. The census numbers in Ireland are radically different from the various other CSO studies that show perhaps one in eight people are providing care. The number in the census is much smaller and quite different from what we would expect based on international levels.

In response to the second question on homophobia and caring, there is not necessarily a great deal of research on care and homophobia. There is research showing that for some younger male carers, there is an element of homophobia, in particular from peers. Again, because care has been feminised for so long, it is seen as something that women do, so if a boy does it, it is seen as strange. That view is prevalent. I do not believe there is any Irish research based on that because there is very little on caring in the LGBT community. It comes back to the general assumption that if when someone is caring for a person the care package is for cisgender and heterosexual care. We need to think about what that actually means. I am currently doing my doctoral study on that exact topic. I will not go into too much detail because I could talk about it for the rest of the session. I should probably draw a line under it at this point.

Chairman

I thank Ms Hughes for that. I am conscious of time.

Ms Zoe Hughes

I will hand over to my colleagues.

Ms Clare Duffy

I am so pleased that Professor Lynch raised this matter because there is a major issue with the enumeration of carers in the census. It is question No. 22 in the form. To give an idea, the census of population 2016 enumerated 195,000 family carers, or 4% of the population. By comparison, another study undertaken by the CSO, the Irish health survey, enumerated just under 13% of people as carers, which, when extrapolated to the national population, is about 500,000 people. It has led us to a position we do not want to be in, on in which we cannot rely on census data.

Going back specifically to young carers, the same question in the census, No. 22, also enumerates young carers. It has been included since 2011. In 2016, it enumerated 4,700 young carers, which is fewer than the previous census. By comparison, the health behaviour in school-aged children survey, which is undertaken among students aged between 11 and 17 in schools across Ireland and funded by the Department of Health and World Health Organization, showed that 13% of children in schools identified as being a young carer. That does not mean everyone of those children was vulnerable. Much caring can be a positive experience but at the other end of the spectrum, some of the young carers will be vulnerable. Again, extrapolating that to the national population indicates we could have 67,000 young people aged between 11 and 17 who provide care. In contrast, according to the census, there are fewer than 5,000 carers aged under 18 in the entire population. We definitely have an issue with the wording of the question, which asks if a person provides unpaid personal care. If I am getting carer's allowance or if I am just helping mum rather than providing personal care or intimate care, I will not tick that box. There are problems and I am glad they have been flagged.

Mr. John Dunne

I will briefly make two quick points. My answer to the direct question is "No". I know we are not all agreed on this. I think it would be very valuable to have a question in the census about caring for children. Family caring, if I could put it like that, and parenting are two different things. There is an overlap between them. One of the challenges in changing the census is the need for consistency of data over time. There is an extra one now that we are trying to fit into the EUROSTAT framework. There is definitely room to progress it but I would prefer to see two questions rather than simply a bigger aggregate number, which might be more difficult to get to the bottom of.

The point Ms Hughes raised on homophobia is fascinating. It may well be more a function of adolescence. We are back to travelling now after Covid. Ms Duffy and I travel around the country twice a year and we meet approximately 1,000 carers in different places in the space of a fortnight. We ask them what they want. When I asked what we could do, I still remember a man telling me what he would really like would be that when he is with a group of male friends and someone asks what he does, he would not be met by silence when he answers that he is a carer. I thought that was fascinating. I am still not sure whether that silence is linked to homophobia, but there may be an element of embarrassment about it. I do not know what it is that triggers the silence but it is the truth. It may be more acceptable for a woman to say she is a carer but a man who says it does get a look. With adults, I do not think there is a homophobic agenda but the point is that it is seen as odd and we do need to normalise it a bit more.

Chairman

I thank the witnesses for those very interesting insights.

Deputy Sorca Clarke

I thank the witnesses. This is a very important topic and their presence reflects that, as does the committee's commitment not only to consider what the Citizens' Assembly has recommended but to somehow translate that into policy in the future. That is what has me so concerned about these numbers and the number of people who are caring because no policymaker can plan effectively if we do not have the data.

I agree that the definition of "care" in some respects needs to be a little more structured than it is at the moment. It is too narrow in many respects. As Ms Duffy said, people who do not provide personal care believe they are not a carer. That is not true. The first issue is why we are not asking the right questions. The second is that we will not get the information we need to address the needs of carers now and in the future. We cannot say we are unable to plan properly until the next census comes around, by which time we may have got the questions right. That is an abdication of responsibility and it is simply not tolerable.

We know the carer's allowance is subject to a means test. I have a very strong opinion on this because as well as putting additional pressure on a single person to provide care, it also puts that person in a vulnerable position by making him or her financially dependent on somebody else. This effectively creates a cycle whereby that person cannot look at other options for personal development and the difficulty that creates may result in someone else in the family unit who may wish to take on responsibility for providing care being unable to do so.

We know the census is not correlating the right data. We cannot definitively put a figure on the number of young carers in the country. How do we fix that because it needs to be fixed? Is there a solution? I agree with Ms Duffy that not all young people who provide care are vulnerable. Sometimes, however, there can be a very thin line between not being vulnerable today and being in absolute crisis next week. If those young people do not identify as carers in the first place, it is likely they will not have information available to them on where they can go for support. We am very concerned for the well-being of those people.

I return to the issue of maternity leave. Professor Lynch touched on the issue and did an excellent job in that regard, but there is another aspect to maternity benefit that does not get the level of concentration it deserves. I say this as somebody who has had four children and without once having my maternity benefit topped up. There is another side to this. It is something I am coming across more in recent times. Where a woman is the primary earner in the home and her maternity benefit is not topped up by the employer, the family cannot apply for a mortgage. The financial restrictions the family face most likely mean there will be a break in their savings, which has a longer term impact on the family in terms of having a child. This is likely to have a significant impact on people choosing to have children and whether they delay having children. It could potentially put a family into crisis if the pregnancy was unplanned. That then impacts on their ability to provide stability and a roof over the rest of their children's heads in the long term.

The witnesses mentioned the experience of male carers. Gender inequality fails everybody, not just women and girls, but men and boys too. Sometimes those who are in a caring role speak of being isolated. Sometimes it is geographic isolation and at others it is emotional isolation and isolation related to their well-being. Do the witnesses see more of that in men who are carers because of the lack of recognition of the work they do and the care they provide?

I want to touch on the role of home care workers. The organisations Mr. Dunne and Ms Hughes represent do some good work on that. People are asking and want to live independently for longer. They want to remain in their own homes for as long as possible. If we are going to become more reliant on home care workers, what is the long-term impact of us failing to do proper workforce planning? We know the area is underappreciated. The staff are certainly overworked and underpaid. The terms and conditions are truly deplorable in some instances. If we, as policymakers, do not get the policy relating to pay, terms and conditions right, we will not attract other people into the sector. We will then be even more reliant on the commercialised sector. Have the witnesses looked at that in any detail? Have they any pointers on it for the committee? I am concerned. People want to stay at home. We do not have the correct mechanism in place to facilitate home care workers to do that. The system is not meeting people's needs, otherwise we would not be having this conversation, and we will be further reinforcing that problem.

Chairman

Answering that is no easy task. That was a long question.

Mr. John Dunne

Professor Lynch and I were talking about the home care question outside when we were waiting to come in. I am always nervous of saying, "Four legs good, two legs bad", which is from Animal Farm. The idea of "private sector bad, public sector good" is certainly not universally true. The question is about what sort of system one wants to model. I have no ideological hang-ups one way or the other. The State has, to date, proven to be completely unable to deliver a 24-7 care model in the community. That is possibly because it has not tried hard enough. I do not know. Coming from where it is, it would be very difficult to turn a switch and say it is going to do things differently from 1 January next year. It would require an enormous change, not just to finance but also industrial relations and norms which are well-established. One then adds into the mix the not-for-profit and commercial organisations like us. There has been a debate in our sector. I have been clear that the best commercial organisations are pretty good and the bad ones are shocking, but it is also true that the best not-for-profit organisations are pretty good and the bad ones are shocking. One may argue that the motivations are different, but the fact is that you cannot point to any part of the market and say it is the perfect model.

To be fair to the HSE, there is some sophisticated thinking which implicitly acknowledges the current model is not fit for purpose. I do not think it is moving towards and I do not think it needs to move towards doing away with external contracting. There will probably be more block commissioning. Rather than offering casual work of two hours here and there, it would allow people to be employed on a secure, permanent basis. That allows for things like training. As mentioned earlier, people need to be offered a career path. It is all very well to say we will employ people. The rates vary. The headline rate is for the basic core hours. At this stage, it is probably about €14 per hour. I am sure there are groups which pay less, but not many, because people will not work for less. There are also extra associated costs. One significant issue at the moment is that there is no provision for either travel time, which is a legal requirement, or travel expenses. There is a public system which pays its staff to travel and a contracted sector which is not funded to do that, seemingly as a matter of principle, though not a very good principle.

Many matters could be reformed but I cannot envisage a situation where there would not be reliance on a mix of the two. Speaking as someone involved in the tendering process, it is a pain in the neck to have to put on one's best suit every couple of years to go out and make a case, facing competition with other people. The competitions produce bizarre results. In one part of the country, there was a quality floor and price was the differentiator. The winning bid was from a commercial provider that was named earlier. It had just attracted €25 million in seed funding for a nursing home and decided that this would be a good sideline. It swooped into one area, promising the sun, moon and stars. It came first in the tender, but it has never delivered an hour of home care, because it did not know what it was talking about. The system was not able to filter that out. We need to learn to get better at that kind of thing.

In principle, one is looking at a core State service. I do not mean the easy 8 a.m. to 6 p.m., Monday to Friday times. By core, I mean that the State should be at the heart of this. A model to provide flexible support will be needed for the future.

Chairman

I thank Mr. Dunne. It is helpful to hear the practical side.

Ms Zoe Hughes

On the question about how we get the right numbers, there could be another three-hour session on that topic. Family Carers Ireland has written papers looking at the different definitions in different jurisdictions and how it all works. It is difficult. Looking at other jurisdictions and how we can do that here is a good starting point. I will move on rather than go into detail on that.

The Deputy asked if isolation is more prevalent in male carers. The research indicates that it is. Male carers are less likely to seek support or to accept help when it is offered. They are more likely to feel uncomfortable at carers' groups, because they might be the only man there. They are more likely to feel stigmatised and less likely to have understanding employers. This all comes back to the assumptions that are made about care. When I use the term "male carers", I also mean transmasculine and non-binary carers.

The way around that is to look at matching solutions to the individual. On the surface, caring is caring, but the experience is different for each individual. Certain issues come up repeatedly relating to access to services and so on. The challenges may be the same but the solutions might not be. One can look at individualised solutions to certain problems. That goes for any minority group which is accessing carer supports, whether a religious minority, cultural minority or gender minority.

Professor Kathleen Lynch

There are approximately 30,000 people in nursing homes in Ireland. As I stated earlier in the context of market research on residential caring, the value of that market is €718 million. Unfortunately, when one goes through the market research field and reports, one cannot get any reports on profits. That should be available. If the State is providing subvention to for-profit businesses to a large degree, their profits should be public. As the Deputy said, we know from numerous studies that older people prefer to be cared for at home where possible. If one is in the nursing home, it costs €1,000 to €1,300 a week, going by the list of State-registered nursing homes, which is an enormous amount of money. Yet, from what Family Carers Ireland has just said, people caring for others at home are lucky to get two hours a week. Depending on how they are paid, they might not even have €200 a week, never mind €5,000 per month. I am asking about costs, as I asked about childcare. Who is making money? Can we have a more efficient system? If people want community care and for families to be cared for at home, is that more cost-effective as well as desirable?

Yet, if we do not have any idea of how much profit people are making in the for-profit industry, how can we do an assessment of its viability? That is a fundamental question.

Chairman

I thank Professor Lynch for that. I think Ms Duffy wants to come back in.

Ms Clare Duffy

I want to return to Deputy Clarke’s first question about looking at the number of carers. It is scary how that is responded to that from a policy perspective. The Department of Social Protection put a definition on carers as being full-time carers. That is how we tend to define it as well in our work. We have full-time carers, then there are carers who are providing fewer hours. The definition of full-time care is providing more than 35 hours of care each week.

We must recognise the real challenge that we have in identifying and establishing how many carers there are. One of the recommendations of the Commission on Pensions was to establish statutory register of family carers. It has made a strong recommendation on developing a dedicated pensions solution for long-term carers. It is one of the recommendations of the citizens’ assembly. Aligned to that, it also said in its recommendations that if we are to achieve this,a statutory register of family carers is needed. That does not exist. The closest proxy we have for the number of full-time carers in Ireland is how many people receive the annual carers’ support grant. That figure is 115,000 every year.

To tie up some of this discussion at the end, and as Professor Lynch has rightly said, we have a huge anomaly between a person's right to a nursing home bed under the provisions of fair deal but no equal right to remain at home. That will all be tidied up - fingers crossed - when we have the statutory home support scheme, which is due before the end of the year.

I will go back to Deputy Clarke’s question about how policy can evolve. It is intended to help families, but yet it actually lands more on their knee. This is probably one of those examples. Under the new statutory home support scheme we have a commitment that adults of all ages will be entitled to home support where they need it. That applies to anyone over the age of 18. The HSE will simply not be able to provide all the hours of support that those people need. If someone needs full-time care and the HSE can give them ten hours, who provides the balance of that care? Again, it is going back to the families.

Chairman

I am conscious that a number of others want to come in. I have not been following the time limits. We will put a limit of seven minutes on the exchanges from now on, if that is okay. I call Deputy Bríd Smith next, who will be followed by Senator Chambers.

Deputy Bríd Smith

This has been an interesting discussion. I am sorry that I missed the presentations earlier but I had to go to the Chamber.

I have a couple of questions. One of the issues Professor Lynch touched on is the profits made in the industry. While this is not a scientific way of approaching it, I am reflecting on the example of my own community of Ballyfermot. A large number of people in that community - mainly women but some men as well - are carers and traditionally they worked the home help teams. They were locally based. They were run in local offices by the HSE, nuns and all sorts of people. Everybody knew everybody they were caring for. Professor Lynch said that being cared for is also about being loved. That was a huge element of that job. One woman, for example, on my road looked after three of her neighbours. She was mad about them. She was there for them all the time. They could pick up the phone if they needed her or if something awful happened. She spent a couple of hours with each of them every day. Despite all the protests, we had to try to maintain the home help system, she works for a company and she is tied to time. She can only spend 15 minutes with one person, half an hour another person and the company follows her on a mobile app to make sure that she is in and out on time. She is totally pressurised and she hates the job. She has not got the same rapport, because she is not necessarily minding older neighbours who she grew up with. It seems that the concept of privatising and making care a for-profit business has demoralised and dehumanised the sector, both for the workers in it and for the people who are receiving it.

There is the added problem that many migrant workers go into this because it is so badly paid and badly regulated. Many migrant workers find it hugely difficult. I suspect there is a level of exploitation. The witnesses might comment on that if there has been any research on how migrant workers fare in the sector. There is also the added problem that older people are sometimes deaf. They may not understand an African accent or an Indian accent and they feel alienated. The movement away, whereby the State is extracting itself from the home help system in the community and allowing all these multinational companies to flourish on the back of that around the country, has been a disaster. I know so many people, as I am sure do all the other Deputies and Senators, who cannot get out of hospital because no home care package is ready for them. They are, therefore, occupying beds that they do not want to be in. They want to get out but there is no home care package, because this for-business model is messing it up.

I have some direct questions on the witnesses’ research and the work that they do around migrant workers, as well as around respite. I was a home carer for approximately six years for my mother. The respite grant would come in June. It was the sum of €1,500 or something. You would mostly use that to pay your car insurance or some big bill, because the money you would get during the year would not cover it. The respite never came. In my own community, there is a great little community hospital called Cherry Orchard Hospital, but it has closed all the respite wards. That is where people used to be able to get a week off. They could put their mammy, daddy or daughter, etc., in so that they could get a week off. The whole thing to me seems to be in an awful mess. What I am hearing here is confirming that. My questions are around migrant workers, respite care and the question of mental health. I have just finished reading Dervla Murphy’s autobiography. It is extremely sad how the mental health of the carer, as well as the people they are caring for, starts to disintegrate if they do not get support.

Chairman

A vote has been called in the Seanad. Our Senators may wish to leave for a few moments. I thank Deputy Smith, who has raised many important issues. I call on Professor Lynch first this time.

Professor Kathleen Lynch

I was trying to make a point at the beginning, which I know it may appear academic, but it is actually what the Deputy has just said. Caring is about relationships. When you get old, it is not just a matter of being kept clean. There is research showing this. I refer particularly to Professor Timonen from Trinity College Dublin. They have done many studies of older people about who are being cared for. This includes a former student of mine, Luciana Lolich. They say exactly what Deputy Bríd Smith said. They want to be cared for by people with whom they have relationships. It should not just be the case that somebody comes in and washes them, or that they are only there for five minutes.

Time-defined care becomes supervision. It is not care. Many people who need care on their own are lonely. I will come back to the mental health issue. The reason they want somebody who can talk to them is that they need company. They often need company more than they need washing. Deputy Bríd Smith is saying that we need relationships to build up in care. That means that people have to stay. As members will know, as in the childcare sector, which was discussed at the committee’s last meeting, and even more so in the home care and in the residential sector, there is constant mobility of people out of the sector. There is, therefore, no relationship. It is often the relationship that matters to the person. The Deputy is 100% right on that.

She mentioned migrants. The Migrant Rights Centre Ireland has done some work in this area. Many people are working that sector who are migrant workers. We know very little about them except that they claim that there is much exploitation. I cannot say that is definitive because we have not had a national study. I cannot say it for definite. However, I referred to report from 2015, which stated for example that in many nursing homes there are many people who are migrant workers. That is not wrong. That is fine, except how long will they stay? What is the security? There are many issues there. It is a matter of the quality of relationships. We have so much focus on a medical model of care that is about bodily cleanliness, if I may say so, and about physical safety. Yet, in fact, when you are old and alone and if you are there all day, what you want is a relationship. You want company.

The State has abandoned certain people in many ways in certain counties in Ireland. I am very familiar with County Clare, where I am from. I had this experience with my own mother. We fought tooth and nail not to have a private provider when we were supplying care. When people talk about full-time carers, as somebody who has done it for a long time, we have to have many commuting carers. They commute from Dublin, Cork and all over the country. My sister and I did for weekends ad nauseam, when we were up at night on Saturdays and Sundays.

If somebody has to be turned, you have to be there. I do not know why that is not counted in the census; it does not exist. It is a big national issue for people who are doing it. There are respite services and a grant of €1,800, but the amount is so small. It is tiny and does not remotely cover ancillary costs, such as the constant washing of sheets and ESB and energy bills, heating the house and all of those kinds of costs. There are enormous costs involved in being at home. It is an enormous issue and I agree that there needs to be some kind of home care package driven by the needs of people and not by making money.

Chairman

I thank Professor Lynch for raising the point about commuting care, which is often lost or overlooked.

Ms Zoe Hughes

I do not have a huge amount to say and I am conscious of time. One good thing to note was that the respite grant's name was changed a couple of years ago to the carer's support grant. That was done to reflect the changing nature of how carers use the grant, many of whom were using it as a respite from bills or extra costs and not necessarily from caring. Access to respite is a huge issue and I know there is probably not much time to discuss it but they are very valid points.

Chairman

There is a clear recommendation in the assembly document on that.

Ms Zoe Hughes

Yes, there is. There is also an opportunity now to rethink respite and how it has been done. We have had two years of pretty much all respite being closed. Places are starting to open up again but availability is not even close to what it was before the pandemic, which was not much.

Chairman

Mr. Dunne wants to come in on respite, specifically on recommendation No. 7 of the assembly document.

Mr. John Dunne

Respite is a big broad area. Centres that provide residential respite, by and large, suit carers of younger people. Carers of older people often do not like residential respite. They would prefer in-home respite in order to stay at home. I make that as a starting distinction.

Another distinction can be made between regular respite, whereby everybody should be able to take a break every so often, and emergency respite, when carers need cover such as for a family occasion or going into hospital for an operation. In the past 18 months, the HSE began to acknowledge emergency respite as a concept in its own right. We do a lot of work in trying to deliver such respite. We are successful in about 50%, maybe 60% of cases. In other words, we cannot find suitable respite in 40% of cases, either because it is for someone who needs residential space with clear criteria that is not available, or because workers are not available in a particular area. I believe 50% or 60% is better than nothing. Historically, there was no emergency respite. There was a service called emergency respite that could be availed of if it was booked a year in advance. That is a strange sort of emergency service.

I totally agree with the point raised about the idea of home help. It was an extraordinary move by the HSE to effectively get out of the business of home help and get into the space of personal home care. In trying to backfill this, I would suggest that in looking at overall labour force planning for the home care sector in Ireland, an interesting training model could be provided that involves trainees who are not yet in a position to do one-to-one caring, but would certainly be able to provide home help. As part of a graduated ladder of levels of care, the basic level could be home help, which includes company keeping and doing small tasks to some extent, such as going to the shops. Professor Lynch is right; at the moment the focus is on cleanliness and some medication care, although that is quite low.

Mental health was mentioned, and I might have misunderstood the point, but the mental health of carers has been a big issue in recent years. We have developed a counselling service that is proving very effective. Our whole model of counselling is around how caring is a good and rewarding thing but it is also challenging. People cope, have routines and go along at a certain level. Periodically, the caring arrangement changes and something happens, such as the person has an extra illness or falls or whatever, that causes a strain on the system. Carers periodically go into crisis. Our focus is on trying to bring them back to a sustainable model. Our counselling has been very effective in that regard. Counselling that is just talk is not much bloody use if someone is stressed and needs counselling because they cannot afford to pay the bills or they have to carry their adult son upstairs because they do not have a downstairs toilet. There is no point in talking about that; something practical has to be done as well. Our holistic intervention around carer well-being includes counselling, of which we can measure its effectiveness, but if we did not have the practical responses to go with it, it would not be half as effective. The mental health of carers is definitely a big part of it.

I am obviously one for weird references. Dumbo thought he could fly because he held a feather in his trunk, but then he dropped the feather and discovered what happened. We live by having confidence in ourselves. If carers lose confidence in their ability to cope, that is it, they are gone and cannot keep it up.

Chairman

Senators will return to the meeting in a moment. In the meantime, I call Deputy McAuliffe.

Deputy Paul McAuliffe

If Mr. Dunne keeps making references from George Orwell to Dumbo, he will feature in Miriam Lord's column very soon. I thank the witnesses for being with us today.

I have a few questions, the first of which is about how carers connect with supports that may or, in often cases, may not be available. From my experience, initial contact is through the public health nurse. What issues do the witnesses see with that framework? Many families do not know that the public health nurse is the person they should contact first. Mr Dunne is right in that they find their level of sustainability and then reach a crisis point. They reach out to seven or eight organisations, receive answers of "No" from many different directions and yet the public health nurse is the person to whom they should go. How does that connect them with different services that provide State support in terms of healthcare, the perspective from which the public health nurse obviously looks at it? I believe what is also absent are the financial and other supports that might be available to the carer. Often, there is no one available who covers that aspect. If any of the witnesses have knowledge of the initial interaction with the public health nurse - that is not to criticise the nurses - is that connection fit for purpose? How might we improve the other areas that are not covered by the public health nurse?

Chairman

I thank Deputy McAuliffe for his practical questions.

Mr. John Dunne

In fairness to public health nurses, they are scarce on the ground and are run off their feet. From our experience, they are very good if you can get them, and that is not a criticism of them. We are involved in a project, about which we are very hopeful, that trains GPs to look out for carers. All they have to do is refer the carers to us and we will take it from there. It is about connecting carers. Far too often, carers arrive too late at our door. They come home to Ireland to look after someone in their family and by the time they come to us, they have lost the capacity to claim carer's benefit because there was a break in their transition to social welfare. People come to us who have crocked their back because they never got patient moving and handling training. Their back might recover somewhat but it will never be quite the same. Usually, people come to us when they are in trouble and the trick is to spot them beforehand. Public health nurses and, hopefully, GPs will be important and useful in signposting that. We have to be ready at the other end to meet, greet and serve carers.

Last year, the Government provided funding for a carer guarantee, an initiative that we have been talking about for a long time. At the moment, it is a bit of a postcode lottery, but there are certain services careers should be able to access wherever they are in the country.

We are happy to take responsibility for delivering those services. I do not say that lightly. To try to scale this up to a national level is a scary prospect, but someone has to do it, and nobody else is really available.

To answer Deputy McAuliffe's question directly, public health nurses are good but they are not always there. GPs would be a very helpful second round. As for the other supports, I may be misunderstanding this, but we have a team of staff around the country working in communities, and part of their brief is not to duplicate everything but to try to identify the supports that are in each community and that might be useful in order that when carers comes to us, while we will not necessarily do the providing, we can point them to the right person.

Deputy Paul McAuliffe

I am thinking about more practical things like social welfare supports and the former respite care grant we have talked about. Often people do not know about those things. I am thinking about almost a Citizens Information for carers that is tailored to the interactions of carers when they present. As Mr. Dunne rightly said, it is not just the caring element but also the financial element that wears people down. When people present at that point of crisis, when they have just gone beyond the point of coping, nobody addresses that second aspect. Certainly, the public health nurse team is not equipped or-----

Mr. John Dunne

To be fair, we have done some good work with the HSE during Covid. As a general rule, what causes a crisis for a carer is that the HSE is able to respond to less than half of the need because it can be housing, financial, transport or whatever else. However, we now have an emerging protocol in that regard with the HSE. We told the HSE at one stage during Covid to give us its most problematic cases. Some of them were exceedingly problematic and required a holistic response, but in one case it was simply that there was someone in a high-rise apartment in which the lift was broken. The HSE did not know where to go with that. It took us a phone call and maybe a visit and it was sorted. We need somewhere that holds the broad range of responses. I will put our hands up in that I am not saying we are doing that everywhere yet, but we are rolling out the guarantee.

As for social welfare specifically, to be fair, both Care Alliance Ireland and Family Carers Ireland share information, and the Department of Social Welfare is very proactive in that regard and good at that. Where people often need help is in filling out the forms. The statistics show that quite a lot of initial applications are turned down, often because the form was not filled out properly. Then a significant number go forward for appeal. We provide an awful lot of help with appeals as well.

Deputy Paul McAuliffe

I hear everything Mr. Dunne says. This is sometimes very much akin to the issue of rough sleeping in that there are supports there but for various reasons people fall between the cracks or do not know where to access those supports. Does Mr. Dunne think that separating the caring support connection from the public health nurse structure might be of benefit? The public health nurse has a much wider remit, whereas somebody with a more specific focus on supporting family carers would have more time.

Mr. John Dunne

They might. I think we have that with our team of staff. The trick is not for someone to have that focus because we can always send a carer there. The first thing is to find the carer. The reality is that most carers in their early stages of caring do not identify themselves as carers. They see themselves as a diligent son, daughter, husband, mother or father looking after someone. However, when they bring the person for whom they are caring to the public health nurse or the GP, if the GP or the public health nurse can spot that there is a caring relationship and that the carer could perhaps do with a bit of help, that is where we think the real gold will be. The carers will not come. We can put up signs stating, "We are here to help carers." I have been the main carer for my mother for 30-odd years. I was working for Family Carers Ireland for six months before it occurred to me I was a carer. I did not join the organisation out of conviction; I went in as a management consultant.

Deputy Paul McAuliffe

With the Chair's discretion, may I ask one further question?

Chairman

Sure. I am conscious of the time, though, and I want to bring in our other witnesses.

Deputy Paul McAuliffe

I was facilitating the committee to-----

Chairman

We appreciate Deputy McAuliffe's holding the fort while the Senators were detained.

Deputy Paul McAuliffe

I cannot get my head around the contract and the tender for the service where people arrive for 15 minutes of professional care. With most tenders and contracts, the provider inflates the tender such that it is often bigger than what is required in order that they can gain profit and so on. However, the system we currently have seems to be such that they have almost cut the costs out of this so much as a collective industry - I am not suggesting they act as a cartel - that there are not the basic finances within the overall envelope to meet the demand. Effectively, we have professional carers operating on zero-hour contracts, despite that being prohibited under law. Furthermore, there is a common law obligation that any costs incurred in the course of carrying out one's employment are met by one's employer. If one travels from house A to house B to house C, it is obvious that the costs are being incurred by the carers and that they are incurring them in the normal course of their employment. Again, I cannot understand why the contract does not prohibit that or why nobody has taken a claim stating that he or she should be paid for travel costs between houses. There is a more structural issue there in that the tender process is a savaging exercise among the whole industry, whereas the industry should use it to bring in more resources - and it should not be an industry, but that is a separate point.

I hear rumours that the overall number of contracts is being reduced and that some of the community-based tenderers may be squeezed out by the HSE wanting to deal with maybe four or five large providers. Could the witnesses comment on that? There were a lot of questions there.

Chairman

I might see if another voice wishes to come in on this - Ms Hughes and maybe Ms Duffy?

Ms Zoe Hughes

Not necessarily on that question, but I do have a comment on one of Deputy McAuliffe's earlier questions. Is that okay?

Chairman

Sure.

Ms Zoe Hughes

In response to the question as to how people get their supports, one of the key questions that is really important is whether there is a way to involve family carers' issues in the formal education of health and social care professionals, regardless of a GP, a nurse, a speech and language therapist or whoever else. As Mr. Dunne said, very often people do not necessarily know they are carers, and until they identify as such they will not necessarily search online for carer support. That is really important. Perhaps there is a way to bring in a module on carers, support for carers and the issues facing them. I am a social work professional. We have often had social work students placed with us and we supervise them while on placement. Very often they come in not really knowing what a family carer is or what the challenges are. They leave after three months saying they never really realised that and, therefore, that if they end up working in a hospital setting they will know to talk to the person accompanying the person with whom they are working. That would really help that aspect. That is the one point I wanted to make.

Chairman

I thank Ms Hughes. I call on Professor Lynch, and then we may go back to Ms Duffy and Mr. Dunne.

Professor Kathleen Lynch

I will make a brief comment on the point Deputy McAuliffe made about cost-cutting and reducing the number of players in the market, as it is called. It is extremely dangerous. It is a real problem in this country. It may be bureaucratically convenient but it means, as I have said, and I have provided the figures in my presentation, that the big providers can outbid the smaller ones and, because they have the capacity, the HR, the finance and the tendering experience, the time it takes them to tender is minuscule relative to their size. The time it takes a very small community group to tender is enormous. There is a very serious issue there. As I said earlier, it is well known internationally that once you start to corporatise care, the corporate carers dictate the terms on which care is tendered for and provided for and, eventually, will squeeze out the small players. Then we are in a monopoly or quasi-monopoly situation. That has to be looked at because people prefer community care. That is a policy consideration that has to be looked at because the cost ultimately results in what is called gouging and financialisation of the care sector, whereby private equity firms, as referred to already, invest in the sector and then start to indebt it and to gradually withdraw the private equity. The body or the nursing provider is left with the debt. That body then appears to be unviable and then raises fees. There is a question here as to how we provide care and how it has become a money-making exercise, which we have to look at, as opposed to providing a service where people need it in their own communities.

Chairman

I thank Professor Lynch. Mr. Dunne or Ms Duffy might wish to respond to the points Deputy McAuliffe made.

Mr. John Dunne

Deputy McAuliffe used the word "effectively" when referring to zero-hour contracts, but this is casual employment, so it is not the same. It is not satisfactory or adequate, but that is what it is.

Deputy Paul McAuliffe

Sometimes it is not casual either.

Mr. John Dunne

That is true. People do it because, I suppose, in many cases they have to do it.

The HSE will say that a cost proposal and breakdown are required in the tender. Travel costs are included as a part of the breakdown of the hourly rate. There is no visibility of what distance someone is going to go and whether there will be a half an hour or a four-hour call. It is a nonsense. It is a box-ticking exercise. The travel thing, as I mentioned earlier, is completely broken to the point that the system is not working. I hope the new tender, which will happen later this year, will address this in a more sensible way. That would help.

The movement on the new tender process is in the direction of greater consolidation. That is probably a good idea. There are massive economies of scale in organising home care. We must consider the human contact part of the issue. From the State's point of view, there are considerable regulatory risks, if that is the right phrase. The tender for a contracted provider contains tens of pages that are simply lists of the standards with which they must comply. We are not talking about a 100-page document that defines the standards; we are talking about something that is bigger than a good, old-fashioned telephone book full of standards that must be met. There is bizarre stuff involved. We are strange as a voluntary organisation in that we are very diligent about all of this and go through all the standards included. I asked if we were using the IT system we were supposed to be using because I had never heard of it. The standards are changed every year. We asked if we could get access to the IT system and were told we could not. We said we were required under the tender to use the IT system and were still refused access. It is a very strange system in which people are drowning in regulations. A certain minimum scale is required.

Moving away from 83 providers, block commissioning cannot be done. A total of 500,000 hours cannot be commissioned that will allow proper employment contracts for home care workers if that is being done across 120 small providers. That is the trade-off. I am not taking away from any of the points Professor Lynch has made but this is the other side of the argument. As with everything, it is about striking an appropriate balance.

Ms Clare Duffy

The Deputy asked about social welfare supports for carers. A PhD in social welfare would be needed to figure it out.

Mr. John Dunne

Ms Duffy has one, of course.

Ms Clare Duffy

I have studied for years. I am working on my doctorate in social welfare at the moment.

Chairman

Ms Duffy will be in demand.

Ms Clare Duffy

It is very complicated. A medical assessment must be passed for the carer's benefit, which is a different medical assessment from the one for the carer's allowance. It is complicated. Going back to a universal basic income, UBI, or participation income would simplify that. In itself, that would speak to the issue the Deputy raised.

Deputy Paul McAuliffe

Is Ms Duffy suggesting a similar income to that provided for artists?

Ms Clare Duffy

I absolutely am; I am suggesting a participation income along that model. In its simplest terms, it would mean the abolition of the means test.

Mr. John Dunne

The language in the artists' scheme is interesting because it talks about allowing artists to be free to provide this valuable service to society without having to worry about where their next pay cheque is coming from. If the word "artist" was removed and the phrase "family carer" inserted, I do not think many people would object.

Deputy Paul McAuliffe

I have exhausted the Chair's patience.

Chairman

The Deputy could never do that. This is an interesting discussion. It goes to the heart of the issue with which the citizens' assembly was grappling and with which we are now grappling, that is, how we can provide the level of human care we are anxious to ensure remains while still ensuring those who are providing the care are themselves cared for and have decent contracts of employment. The desire to achieve that balance can be seen in the citizens' assembly recommendations. This goes to the heart of our discussions. We thank our guests for that. It is no bad thing if there are differences of emphasis among our guests.

Senator Alice-Mary Higgins

I have been following the debate with interest. I had planned to come in remotely but that did not work out. I am torn because I have two separate sets of questions that seem contradictory, which is the nature of these issues. One set of questions intends to move away from the money; the other intends to look in great detail at the money.

There must be an acknowledgement that care costs. If the cost is not being acknowledged and planned for by the State and if it is not in budget systems and visible, then the cost ends up being carried by others. The cost ends up being carried to a large degree by women, although not exclusively, as we have heard. The costs are carried not only in the moment of care but also later in life by the substantially reduced pensions and so forth. There are both time costs and money costs. We discussed time poverty and money poverty, their intersection and the impact on carers in a previous session. That level of care costing is required. There is also a need for care to be valued properly and figured out. We must acknowledge the cost of care and the value of care. Trying to create a market logic or unit approach is not necessarily the best approach. While costs must be concretely addressed, we must reflect the value too. The inputs of what care brings to society in many cases are not containable within the care situation or the care Act because the benefits are elsewhere. In fact, the need is elsewhere. That is perhaps the core issue. It is not an add-on. Care is the thing without which everything collapses. We have seen that. We had a taste of it during the pandemic.

I wanted to ask how we can do that and I have formulated questions across three levels. The first relates to a macro level around budgets. We have new well-being indicators that are being talked about. How do we measure and ensure care becomes visible in budgetary decision-making? That is happening at a European level. What are the indicators that are measured in deciding if the right financial decisions are being made with regard to budgets and how resources are allocated? How can success be measured? Are there other indicators for it? That is the idea of the well-being or even the integration of the sustainable development goals, SDGs, into the semester process, which is being discussed at European level.

Domestically, I am interested in what the witnesses are talking about in respect of the social welfare system and the idea of the participation income. I have a concern. With the first versions of basic income, the idea was that everybody would be paid the same. However, we know that the cost of care is different. We have at last been given the Indecon cost of disability reports as well as the good work the witnesses have mentioned that has been carried out by the Vincentian Partnership for Social Justice. Perhaps they could elaborate on that in respect of the cost of care in its concrete sense. We have those measures. In moving to a universal payment, means testing would be stripped out. It requires individualisation, which the witnesses might elaborate on. We are moving away from family means testing. These circumstances are likely to affect a woman in her 40s or 50s whose partner may still be earning a substantial amount. That is the age group we have heard is predominant. Such a woman is moving to a place where she will not have economic independence in later life. How do we pull out those bits, deal with universal income and also recognise the hard, concrete and real costs of care?

All the witnesses have mentioned not just the gender neutral recognition of care but have supported the recommendation of the citizens' assembly to recognise family in a different way. It would be useful if they would elaborate on that point.

I will move to the last layer of the money valuing piece. Commissioning has been mentioned. I am passionate on that issue and have legislation on procurement that attempts to take account of price and quality. Will the witnesses comment further on the use of lowest cost only tendering? That means that a low-ball bid must be submitted and sets the tone. It is important to have a heavy weighting towards quality in how care is valued because otherwise the large companies that can put in a very big bid because they have stripped costs to a minimum are rewarded. The State must recognise in the context of public procurement that it is not just participating in a marketplace for care. The State has the responsibility to vindicate the right to care and is the single biggest provider of care.

If it is not doing that directly, it should treat itself as a provider of care rather than a customer. I ask the witnesses to comment on that and the matter of time poverty. I also ask Professor Lynch to comment on the market logic piece. Maybe we need to stop pretending market logic is the way to go. It is all that same question of how to strengthen the care logic at each of these systemic decision-making levels.

Chairman

Answering those questions will be no easy task. Senator Higgins has raised a range of issues.

Ms Zoe Hughes

I will not comment on the financial aspects. I will let my colleagues do that. On the recognition of family, it is important that we start to view families in this situation as families of choice as well as families of origin. There is a difficulty with the term "family care", which is what we tend to use in Ireland, as opposed to unpaid care or informal care. A lot of family carers in Ireland say there is nothing informal about the care they provide. It is not a particularly well-liked term, or at least it was not in research we did in previous years. That is why we are very much in favour of expanding the idea of family to family of choice, friends and neighbours. It is a lot more community-based than purely just family of origin.

Senator Alice-Mary Higgins

We were meant to have a statutory entitlement to home care but it was not delivered. I used to sit on the disability committee, which I had to give up to come to this committee. It seems the debate has moved on from personal needs assistants. That was in the recommendations of the citizens' assembly, which referred to that choice of care.

Ms Clare Duffy

None of those were simple questions.

Chairman

They certainly were not.

Ms Clare Duffy

I will focus on some of the social welfare things. The Senator asked how to value care. At its very simplest, we can value care by stopping penalising carers. Our system penalises carers for the contribution they make. Hopefully we are going to fix the pension anomaly but heretofore and as it stands today we penalises carers. When they reach retirement age they get less, if anything at all, because they cared. Sometimes when families apply for a home care package - apologies for my language - they are penalised by virtue of the fact that a carer is present in the home and therefore the case is not deemed as urgent as a family where that is not the case. At its simplest level, we have to stop punishing and penalising them. Then we can begin to move towards valuing them. Some of the outcomes needed relate to access to respite and the right to a break from their caring role. We cannot even deliver on things parents and children with disabilities currently have a right to, such as the right to an education for a child with additional needs. We have to address the problems in the system as they exist now before we can get to enshrining value for carers.

On the social welfare system itself, the Senator talked about individualisation. I agree with her completely. In the model we use at the moment, couples are means tested together. It is normally the wife has nothing, or no income, but because her husband is sitting on a load of land or money in the bank, she gets nothing. Husbands will often say "She is your mother, not even my mother, and you want me to subsidise that care?". We assume husbands are willing to share their pensions, because that is how the current pension system works, or their income but that is not always the case. We are placing women in this awful situation of dependency and vulnerability, not just during their active years of caregiving but also afterwards. The Senator herself referred to the long-term consequences of caring. It is hard to believe. As to how we address that, I have already said it. We need to abolish the means test and create a universal basic income or a participation income, whatever language you want to use. That in and of itself would abolish that individualisation, which is so damaging and is contributing to the statistics Mr. Dunne read out earlier. Within our three social welfare schemes, up to 83% of recipients or claimants are women. That is not by accident. It is because the system is structured in such a way that it contributes to that.

Senator Alice-Mary Higgins

My question was about the lack of individualisation, for the record.

Ms Clare Duffy

Apologies.

Mr. John Dunne

I will take the other hard questions. Budgeting and well-being indicators is an interesting area. At the moment, the budget is not the problem. The money literally cannot be spent because the staff are not there. I would go back to the SOLAS labour force projections for 2017, which came to the fairly remarkable conclusion that we were not going to require any increase in the supply of personal care workers in Ireland. We asked where in God's name SOLAS got that and it told us we would not understand the clever stuff it was doing. Budgeting is about planning. That was a cheap shot at SOLAS really. Nobody minds the odd mistake as long as the system is open enough to spot a particular problem, fix it, learn from it and move on. That is the short answer

The Senator asked about commissioning. The Japanese have a very interesting system. They do a price tender but they throw away the cheapest and the dearest, add up all the rest and come up with an average. Whoever is closest to the average wins the tender.

Chairman

Really?

Mr. John Dunne

I am told that. I have not actually run a Japanese tender myself. It is an alternative to the race-to-the-bottom model. Our current system is, frankly, crazy. Since the first tender came in in 2010, the required standards have gone down. They have gotten more extensive but the core ones like having qualified staff have been watered down progressively. That then becomes a floor. The idea is that providers have to demonstrate on paper that they can meet this floor standard and after that it becomes purely about price. Not only that, the assessment of the quality and everything else is done by people who by definition do not know very much about it. The reason for that is that no one can do an assessment of the tender who is involved in the management of the service, because they have existing relationships with some of the bidders. You wind up in a situation where people are locked in a room with a set of forms that they have not designed and are asked to make a decision based on that. It gets reduced to something crazy.

In the last tender, providers were asked for a pricing schedule for the core hours, weekend hours, Sundays, bank holidays and so on. However, the pricing table was gamed. Anyone who understands these things could have looked at it and seen the overnight rates were only being given a 20% weighting, for example. That is what happened in this particular case. The provider quoted an overnight rate that was actually less per hour than the daily rate. On account of that, it was able to charge a higher daily rate and still get an overall lower score for pricing in the tender, which means the State has paid a lot more money since then because the weightings were wrong. Nobody is delivering overnight hours, by and large, around the country. There was a figure in there and the provider said it would do that practically for free but would charge a little bit extra for the core hours, which is what is being billed all the time.

I do not believe the system is capable of delivering a proper tender. I do not say that lightly. Do not get me wrong; I am not saying that if I was in charge of it I could do a better job. The system just does not work, for all sorts of understandable reasons. You cannot build quality into a competitive tender. That may sound like a fairly extraordinary thing to say. It can be done but only at the level of box-ticking because quality in home care happens behind the front door. At the moment, the HSE is the commissioner, the provider and the regulator, as the Senator said herself. When HIQA becomes the regulator it has said clearly that it will stop at the front door. It is all about providers showing they have a system in place to deal with all the potential problems. It does not actually look at how they would deal with those problems and it does not look at what is happening in the house. I do not know how to get around that with home care.

Senator Alice-Mary Higgins

I would add a note of optimism because I think you can in fact measure quality, but it has to be done in a different way. It cannot been done through a grid. There are the technical specifications or requirements and then it is just done on price. That is the lowest-price approach. The model in the Netherlands, which is the model I am trying to bring in in Ireland, uses price and quality as the default and there are lots of qualitative ways to measure it.

It is difficult but it can be measured, including, for example, in the level of happiness and satisfaction of those receiving care and having that as a heavy weighting.

Mr. John Dunne

I am not trying to be pessimistic, I am an optimist by nature, but the system in the Netherlands has undergone a fairly radical change in recent years. I do not know if the Senator has been looking at the new system or the old system, but the noise I am getting back in the background is that the new system is highly problematic.

Senator Alice-Mary Higgins

I am looking at the 2016-2017 system, which there are attempts to commercially undermine.

Mr. John Dunne

I could put the Senator in touch with some people on that.

Senator Alice-Mary Higgins

That would be useful.

Chairman

The Senator might follow up on that offline. That is an interesting one.

Professor Kathleen Lynch

To follow on the comments, I have some things to say about care. There is one aspect I find it very strange. We have primary schools and secondary schools and we do not ask them to tender every year for their schools. Why is a fundamental service, like the care of children or the care of older people always put out to tender? Why has it been made such a product? This is what it is made into when it is put out to tender. This is what I said in my presentation. I believe that we need a national care planning unit. With regard to how and where it is put, I suggest it go into the Department of Children. Equality, Disability, Integration and Youth, but maybe it would be more appropriate to be somewhere else or in all Government Departments. It is extraordinary that we know we need to care for vulnerable people, people with high dependency needs, both in youth and old age, and we do not treat it as a generic, core function of the State.

Senator Alice-Mary Higgins

That is definitely 100% the better option, and this is also what citizens are looking for with public provision. Professor Lynch is right.

Professor Kathleen Lynch

Following on from Mr. Dunne's comments, I agree with what he said about non-means testing and giving the rate to have people cared for at home that we give to people who are foster carers. We also need to survey and talk to people who are care recipients. I found that there is an importance to hearing the voice. Have we had a national survey of people who are in nursing home care? Do we know if they want to be there? I am sure that the committee is aware - and I have been in three such homes lately - that they are all digitalised access. Many of the old people do not know the codes, so they cannot get out. There are very significant human rights issues that arise in places where people are not able to freely move in and out. Do they want to be there? What kind of home care do they want? Do they want local people who can talk to them in their own language, who know them and who understand them? Maybe they do not. Some people do not. I hear no mention of voice in the discussion about people and care. This is fundamental to addressing what was said about quality.

Perhaps we could look to other jurisdictions but that would be slow and painstaking. Reference was made to time. Care is driven by a different logic. It cannot be measured in quantifiable outcomes. Reducing it to packages, as I have said, is to commodify it and to treat people as if they are getting a box of groceries. We cannot treat it like that because it is not a product, it is an experience. Therefore, the voice, and discerning what people's voice is on an annual basis, including how they feel about the service, would be absolutely fundamental. Indeed, there is a lot of research on small children that shows we could do a lot of things with what they like as well. There is new research around how we talk to, understand and know what children like. As I have said many times, we need to recognise that we cannot produce fast care in packages like fast food. If we do that we get poor health and in the case of care one would get poor mental health.

The carers' health must also be considered. It is extraordinarily stressful for people who are running from one place to the other. I believe that the emphasis must be on the relationship. If one is assessing it we must ask what is the nature of the relationship and what kind of relationship people want. How much do they think they should be listened to on a regular basis? To say that people with dementia do not know is ridiculous. There are numerous ways in which we can discern what people want. Social research is very advanced in this area. If we are to talk about new ways of doing it that would be a fundamental principle.

Senator Alice-Mary Higgins

I like what the Professor has said about it being relational rather than transactional. With regard to nursing homes, there is an issue that has not been raised but it did come up with the Committee on Disability Matters. If we do bring in these rights to care, it is important that when we start providing personal needs assistants, home care or community care that those who are in nursing homes are also able to exit them and that we do not forget those who have been forced into residential care because of the old model but that we can provide routes out This is completely fundamental and I hope that the committee can follow this up.

Chairman

I thank Senator Higgins. I have one final question and then I will go back to each person for a final comment. I am conscious that we have kept the witnesses for more than two hours. I thank all of the witnesses. This has been a really fascinating and important discussion.

I want to come back to how we get to the implementation of those key recommendations that we are talking about, and particularly the recommendations Nos. 4 to 12. The witnesses have really identified the difficulty with the definitions of care and the fact that many people who are providing care do not identify as carers. Presumably, many of those whose voices are less heard, those who are receiving care, also do not define themselves as receiving care. That is also a consideration. It is very useful for us to hear this when we are grappling with how to implement these recommendations.

I wish to raise two specific issues. There are two processes we have discussed that may assist in the implementation of recommendations and I wish to hear the witnesses' views on those. The first is the national planning unit for care, which was recommended by Professor Lynch, as a way of achieving the delivery of the outcomes the Citizens' Assembly wanted. How important would that be? I would like a view from all of the witnesses on that.

The second process, as referred to by Ms Duffy, is the statutory register of family carers, which the Commissions on Pensions recommended. We are mindful that the assembly was very keen to ensure that pensions solutions would be developed by the State for carers. What are the witnesses' views on those specific points about how we would achieve the implementation of those recommendations? What are the best ways to do it? Clearly, a planning unit would seem to me to be a sensible approach, and that statutory register of family carers. Are those ways we can get around the difficulties of identifying carers and those who are cared for, and with gathering the data that all of the witnesses have described as being highly problematic? We will go first to Ms Duffy and Mr. Dunne, and then to Ms Hughes and Professor Lynch.

Ms Clare Duffy

I will speak specifically about the statutory register. We must acknowledge that there is no one single repository where we can identify all family carers in Ireland. How we do that is one of the issues. We were lucky enough to meet the Commission on Pensions. We spent a lot of time talking about it. If we are to have a pension solution for carers, first of all that pension solution is only for long-term carers. This is defined as someone who is caring for more than 20 years. They will have been out of the workforce for so long that they can never plug that gap in their PRSI record after 20 years. How do we even begin to identify those people? We cannot use the question "Did you get carer's allowance for the past 20 years?" because that is essentially a means test on that pension solution. Can we look at who was claiming tax reliefs or caring tax reliefs? No we cannot, because this is also incomplete. As I said earlier, the most complete proxy albeit imperfect that we have at the minute is the number of people who receive the annual carer's support grant. This is about 115,000 carers who provide full-time care and have been medically assessed as providing care to someone in need of full-time care. That process would be imperfect also. The commission's recommendations in the report was that they would work with stakeholders. I believe they named Family Carers Ireland among those. The commission would work with stakeholders and the Government to establish to establish a statutory register. I am not sure this register would sit under the unit that Professor Lynch has spoken of but it would seem like the logical place, with support from our sector. I am not sure. It is definitely needed.

During the pandemic, we lobbied for carers to be prioritised on the vaccination priority list as they were in Northern Ireland, where I am from, and as they were in the UK. It did not happen, but even if we had wanted it to, it could not happen because we did not have a register to identify carers. Such a register exists in the UK but the register in the UK sits with the general practitioners. It is held by the GP practice.

Chairman

That included my follow-up question. That is very helpful.

Mr. John Dunne

We are talking to Departments about a register. The Department of Health's response to me, which I believe has merit, is that they are getting calls for a dementia register, a this register, a that register, and a whatever register. I believe the Department would really like to be able to create a single, broad-based register that would be sliced and diced to generate the relevant data out of it. This would not be problematic from our point of view. Certainly, some sort of register is needed, be it a family-carer-only one or a broader one that includes family carer as a category.

A national planning unit is a sensible proposal. This month in Tullamore, the HSE is creating a national office to manage home care.

I am not being facetious about this but I do not know how much planning there will be. It is an operational unit. However, I do not see how you can do operations without doing planning. That could be a positive step forward. The bad news is that the planning will be done on the basis of a computer algorithm called interRAI, which Ms Duffy mentioned earlier. This is run after a house is visited to assess the resources needed. How much further away from the human side of caring can you get than sticking the answers to some questions into a computer to be told that a person is entitled to or needs 5.75 hours care a week? The first of these questions is whether there is a family carer present. If there is, a penalty is applied. To go back to an earlier comment when somebody said that this is terrible, I fully accept that my mother is in a better situation than another woman in her late 80s who has nobody looking after her. With regard to urgency and prioritisation, it is not unreasonable for the presence of a family carer to be a consideration. The compromise we have won with the Department and the HSE is that, where there is a family carer present, the score with regard to the need of person being cared for is reduced but a separate exercise is done to assess the needs of the carer, who is now part of the equation. That is a better way of approaching this than ignoring whether there is a carer involved because, to be fair, having a carer there does make a difference. The algorithm itself is highly problematic and probably will not produce the best outcome. This has been going on for seven, eight or maybe even ten years now. These things have a terribly long lead time. They are very hard to stop when they get to a certain point. The new unit will be an improvement but I do not know whether interRAI will be an improvement. I totally agree with the idea that we have to somehow inject the human and the personal back into it all.

Chairman

I thank Mr. Dunne. We can follow up with the HSE on that.

Senator Alice-Mary Higgins

We should follow up on the algorithm because there are new EU directives around automated decision-making and artificial intelligence. It is really important that we try to push back on that point. If Mr. Dunne wanted to provide something in writing, that would be useful.

Mr. John Dunne

It is very well established and is used in 45 countries. It would be considered pretty old-fashioned these days, however. It is certainly very medical compared to the holistic approach we would want to take.

Chairman

Senator Chambers has returned. Before I go to final statements and then close the meeting, I will let her in to make some comments. The witnesses can then address them in their closing statements. We were talking about family carers. I am conscious that there are carers who are not family members but who are also not commercial operators. I am referring to friends and neighbours, as Deputy Bríd Smith mentioned earlier.

Senator Lisa Chambers

I apologise for being in and out. We had more votes than we thought we were going to have. It has been one of those mornings. I thank the witnesses for their presentations. I have been listening from the office. I apologise if this has been asked about already but one thing that really caught my eye in Mr. Dunne's document related to the payment scheme that has been put in place for artists. It was suggested that this could be the basis for a new way of thinking about financial supports for carers. Will he elaborate on the thinking behind that? It is a novel suggestion that we have not discussed, partly because that scheme is brand new. It may be a good starting point for us. He also linked the issue to the amounts people receive in the foster care system because that also involves a caring role. There is a substantial disparity between that rate of pay and what carers are getting. I was going to ask about people who identify as carers but I believe Ms Duffy has dealt with that. It was interesting that there was such a big gap with regard to the Central Statistics Office figure. I would not have expected that. It draws our attention to the fact that we cannot trust some of the data we are working off.

Chairman

It is a great help and an eye-opener for us to realise just how poor and contradictory the data are. I will let Mr. Dunne and Ms Duffy back in very briefly on the universal basic income because we discussed that somewhat extensively earlier. I will then let Ms Hughes and Professor Lynch have the last word.

Mr. John Dunne

Our point on universal basic income relates to the language of the artist scheme, which I mentioned earlier. I am paraphrasing but it says that we want carers to be free to provide this valuable function on behalf of society rather than having to worry about how they are going to make a living. The scheme is slightly different in that artists get a guaranteed income but are allowed engage in commercial activity on the basis that they pay 40% tax on what they earn from that activity from the first penny. There are things that would need to be tweaked in order to adapt that model to a carer model where people may wish to work outside the home for a small period of time, perhaps as much for their mental health as for their economic well-being. We had a battle on our hands and had to ask whether the Department really wanted carers back at work in terms of labour market activation. The current system relies on a means-tested income support that you do not get unless you are really poor as distinct from something that recognises that carers provide a service that society values and is willing to pay for.

With regard to foster care, believe it or not, it is not just that the foster carer of a child who is not theirs gets €600 a week compared to the €203 for carers, but that they also get priority access to services over families. I am not criticising foster parents. They are wonderful but the inequity between the two situations is quite staggering. We are calling this out to highlight that inequity. We want to raise family carers to that level rather than pull anyone else down.

Senator Lisa Chambers

Have any costings been done regarding the universal basic income suggestion? Do the witnesses have any idea what the budget might look like?

Ms Clare Duffy

This is where you take out your calculator and you get your PhD because you would need a doctorate to answer this question. The closest proxy we have is the number of carers who receive the non-means-tested carer's support grant every year. As we have already said, that figure is 115,000. We know that 91,000 carers receive carer's allowance. They are also getting the carer's support grant. The other people getting the carer's support grant include the 3,000 people who get carer's benefit. There are also children getting the domiciliary care allowance. All of these are double-counted within that 115,000.

Because it is not means-tested, the carer's support grant can be applied for as an individual stand-alone payment for people who do not satisfy the means test for carer's allowance but who satisfy all other criteria such as providing full-time care for someone assessed as being medically in need of such care. On 1 June 2021, 4,363 people applied for that as a stand-alone payment. Peppered throughout the remainder of the year, just over 2,000 other people also applied. Some of those 2,000 applications refer to the previous year. Based on that proxy, we estimate that, if the means test for carer's allowance was abolished in the morning, anywhere between 6,000 and 7,000 people would start to receive carer's allowance.

It should be remembered that, if we abolished that means test in the morning, applicants would still have to satisfy the medical requirement for the provision of full-time care, which is an incredibly high bar. It is the highest medical bar to pass in the social welfare system. Anywhere between 6,000 and 7,000 people would become eligible. That would cost approximately €79 million. However, half of the 91,000 people who receive carer's allowance are on a reduced rate and receive less than a jobseeker's payment, even though they are providing full-time care. You can see why a PhD and a calculator are needed. That half would have to be brought up to the full level. It is not just the €79 million, but the moneys required to bring those applicants up. It is a really important point to leave with the committee that we assume that those people who get carer's allowance get €224 a week but they do not. Half get much less. I know of carers who get €10 or €20 a week.

A question was asked earlier which I forgot to answer. Sr. Bernadette Mac Mahon from the Vincentian Partnership for Social Justice did a report for use earlier this year which looked at the minimum essential standard of living for caring households where complex care is provided. She calculated that the additional cost on those households is €244 per week more than the actual carer's allowance when compared with a similarly composed household where there are no disability or care needs.

Senator Lisa Chambers

To clarify, the €79 million would be for the approximately 6,000-----

Ms Clare Duffy

Yes, that is what is required to bring them into the net. We cannot ascertain what the cost would be to bring those others up.

Mr. John Dunne

However, it would be in the low hundreds of millions. It would not be billions and it would not be €800 million. It could be----

Senator Lisa Chambers

€200 million.

Mr. John Dunne

------€200 million or €250 million.

Ms Clare Duffy

It is a piece of the jigsaw puzzle. It fits into what Professor Lynch and others have talked about. How do we solve the long-term crisis? It is not a health problem. We have to look at the resources that exist within families. If we get that piece of the jigsaw puzzle right, it will result in savings for the rest of the system.

Senator Lisa Chambers

There is also an administration cost in carrying out means tests, so savings would be made there.

It would be interesting to try to have that calculated. The minute any organisation goes into budget negotiations, the first question it will be asked by the Ministers is on how much it will cost.

Chairman

It is fascinating. I am conscious that it goes somewhat beyond the citizens' assembly recommendations.

Senator Lisa Chambers

Yes. Sorry, Chair.

Chairman

That is okay because we have been exploring it and it may be the best way to get to the outcomes that-----

Senator Lisa Chambers

What is being provided still represents great value for money. I am not disputing that but it would be good to know. There is definitely a financial saving but then there is another benefit in terms of well-being and society.

Chairman

I am conscious of time so I am going to ask Ms Hughes and Professor Lynch to give their closing remarks and to respond, if they can, to the issues raised by myself and by Senator Chambers.

Ms Zoe Hughes

I do not have anything extra to add to Senator Chambers's question. Speaking about the national planning unit for care, I definitely think that is a fantastic piece of work that needs to be done. Siloing is a massive issue across sectors. I did some research a couple of years back, which I will need to refresh, looking at policies, applying, say, the national carer's strategy, the dementia strategy, the ageing strategy and all the various strategies. There are quite a few places where not only do they not complement each other, but they clash. We need to make sure those policies fit together on a macro level and complement each other because that then trickles down into the everyday experience of family carers and anybody else who is involved in care, whether the cared for person or not. It is really important to try to make sure all those policies fit together.

Regarding the statutory register for family carers, as a membership organisation, we would need to go back to our members and get their views on that as well because they will be drawn from across the sector. In some ways, I am always a bit wary of registers of people. Perhaps because I have been in a minority for a long part of my life, I always get a bit nervous when there are registers of people. It is a little thing I have. On a more practical and more professional level, there are questions we need to ask around that. It is a really good idea to have an understanding of the number of people but we would need to figure out how it would be operationalised. If opt-in, then you would perhaps face the same issues of self-definition. If you need to opt-in, then you are still facing that same issue. That is the first feedback I have on that but it is important to figure out a way of getting better numbers because without numbers, it is really hard to show the evidence base that is there.

Chairman

And to plan.

Ms Zoe Hughes

Exactly. That is my closing statement.

Chairman

I thank Ms Hughes. We will give Professor Lynch the last word.

Professor Kathleen Lynch

I put out this idea about the national planning unit and I think it is very important we take care as seriously as we take education. We plan for education. We plan how many places we need. We plan the services and where they will be. If we have no concept of planning nationally for family carers and for childcare, how are we going to have it? It does not just happen by osmosis. I suggest a care convention be held, like the education convention in 1994, which led to very significant changes in education. Very importantly in this case, those people who are potentially moving into the care category, where I might be myself in due course, and people who are already in it should be part of the discussion. The medical model is too powerful in relation to care. It is not a medical condition. Care is a requirement for our human well-being. If we do not focus on the relationships and the quality of the experience, we will get obsessed with whether somebody is able to get out of bed twice a day or once a day. That kind of thing is not the most important thing to most people who need care. They need relationships., they company, they need to be attended to and they need consideration and compassion.

Ms Hughes is right to some degree to worry about a register. We need documentation about carers but, as I have seen happen, sometimes registration bodies can become very controlling and develop vested interests, or that is how I would put it. Professional bodies have of their nature become of that type. I have seen them regulate and control things in ways that are not always right. I am not an expert on it but I can speak with some authority about the education sector. I have seen a change in the entire teacher education sector by virtue of the Teaching Council and people having to register with it. One needs to think very carefully about the registration body, about who will be on it and about the voice of the people who will be the vulnerable other in this context. If you do not have those people present at the negotiating table, you will have a faulty service. That has to be ongoing and people have to change.

I think there was a major shift in policy in this country when we eliminated the National Economic and Social Forum where we had the third strand. Where we had the NGO sector, we always had the voice of the marginal. They were at the Government table. That has been removed. That is a major omission because the voice of people with dementia or people who are ill in hospital needs to be heard. Will they all be woken up at six in the morning to be tested? Nobody ever asked them because we do not take the care of people as something that is a priority. We drive the service from the top rather than from the feelings and needs of the people who are in the service. That is key for me.

Chairman

I thank Professor Lynch for reminding the committee about that and about the voices of those who are cared for. Even the language is very different from the language of carers. There is no one word that sums up the people who are receiving care.

I am conscious we have been here two and a half hours now but I thank the witnesses. I think it is because we are conscious of the vital importance of this issue and the real importance of the citizens' assembly recommendations. It can be seen in the document the citizens' assembly produced the huge priority it gave to the recommendations on care, recognising the gendered dimensions but also the importance for society. The witnesses submissions, contributions and engagement with the committee today have really helped us in our deliberations on how best to achieve the implementation of the citizens' assembly recommendations.

I thank Professor Lynch of UCD, Ms Hughes of Care Alliance Ireland, and Mr. Dunne and Ms Duffy of Family Carers Ireland. The committee really appreciates their input.

The joint committee adjourned at 11.57 a.m. until 9.30 a.m. on Wednesday, 23 June 2022.